BACK AGAIN
BACK AGAIN Hi there one and all
Well back again after a bit of a down period
I had BC + liver mets in 2002 (+ leukaemia in 2004)
Just before xmas I was told that Arimidex then tamoxifen werent working and that the mets were on the war path again…and after my pet scan - I 've got bone mets as well now but I am not surprised as I was in pain.
I am now on VINORELBINE tablets once a week for 3 weeks then a week off as my poor old gut couldnt take 4 wks on
plus bisphosphates in drip form once a month. I was supposed to have a chemio drip instead of tablets but I asked the specialist if I could try tablet form first as I dont want to loose my hair again as I work as a receptionist and I cant imagine being ‘Baldie’ for the clients as they walk in. My spec said ok and would give it 3 months to see if my markers go down and if not then drip chemio + no hair . I have to say that it is my work is what gets me up every day although I find I am really knackered .
Has anyone ideas on how to fight the diahreer(cant spell it ) and the gut pain without imodium .
My specialist did say that she was sure that the chemio I had for the leukaemia for 2 yrs obviously kept the BC mets in check as I only got the " yes you are in remission + no need for more chemio" last July and the BC mets started up agin in September.
Sorry to ramble on but fancied a chat
Hope you are all OK and lots of luv jANE
Ohh poor you.
I had IV vinorelbine and didn’t lose my hair. It still gave me diarhoea though. I used codeine as well as loperamide/imodium as I needed it for pain control as well. IV Vinorelbine doesn’t cause hair loss and even though the label says causes hair thinning -none of the women I knew about 6 of them lost any hair at all.
do they mean that if the tablets don’t work they will give you something else. I’ve had taxotere and FEC and then vinorelbine. I think there are some others that don’t cause hair loss that I could have. I’m going to push for tykerb now as , my breathing is rapidly going down hill. Does your hospital do this trial - mine doesn’t so will have to try to be referred?
You sound quite down - hope things pick up for you and let us know how you get on
Kate
Good for you! It is so nice to hear from people "doing well’ with mets - doing well of course being relative in our position!
I know you have sadly had a progression to bone but to be alive well and still working after a diagnosis of Liver mets 5 YEARS AGO is a fantastic effort!
Your willpower is amazing and I hope I am here in another five years to wish you well again!
I hope this comes across as I am trying to say it - that I also will be able to live a meaningful life so far after initial diagnosis.
Im rambling too…so hope you feel better soon and your diahorrea settlrs!
Try Panadeine Forte - it has 30mg of codeine in each tab.
Nicky
Hi there girls
Thanks for the replies and yes life is good and yes I am lucky that I can still work. I really thought that I was a gonner when they first said I had mets 5 yrs ago - but no way and yes I am stubborn and will give this ‘b’ cancer a run for its money.
I will let you know how I get on and if the vinorelbine works well.
Keep well yourselves
luv jANE
gad to hear news that your liver mets went away . are you her2 pos? i was diagnosed around a month ago with mets to bone and liver and its the liver ones i am so worried about . i am scared the treatment wont work . i am on the red devil . …
my hair started to fall out today and i feel really sad about this as my hair was my pride and joy .
love Tracy
Hi there Tracy
Just to say that its not easy to keep poss all the time . but there is always someone here to answer you or give help- so use us all.
Yes I am Her poss and as for the liver mets they have never gone away so I have had liver mets for 5 yrs and have had no pain or problems whatsoever. When I say the liver mets are always there it means that they havent got any bigger ( or smaller ) since I had them - so the treatment I had worked well for 5 yrs . So there is always hope
And I am sure that the next treatment will work as well.
I dont intend that BC and the cancer will win ( for a long while ) and it will be a hard battle
Keep poss and let me know if you need any other help
Luv jANE
hi jane . thanks for reply . i am her2 neg so cant take herceptin and i am er positive .
i am on day 15 of chemo and am neutropenic so am so tired . they said i should pick up in next few days , but then it will be time for chemo again next wed . god the fun of it all .
love Tracyxx
jane , did you take herceptin? xx
Hello Janewiz Hello i was reading your post and couldn!t believe 5 years with mets ,it made me feel a lot more positive thats for sure .I had breast cancer in 2000 ,it came back in the same breast 3 years later,then 6 months ago went into hospital to have gallbladder removed found a spread to liver, had a scan found it in right lung and bones, phew what a shock. I was 41 when i was first diagnosed ,Tamoxifen stopped working after 2 years, so have been on Zolodex ever since. I have asked my oncologist to take away my overies but he has never been keen, also asked to go on something else with zolodex but he poo hoo that as well , he said it would,nt work for me because i am pre men . So i am on zolodex and Herceptin. Having my 2nd scan in April so scared as to what i might see. Although i feel really well and have no symptons. I am 49 in september i hope i will be here to see my little girl grow up . It was really nice to read your posts thank you . Take care carolm x
Hi there Tracy
Just to say that I am not on hercep as yet - maybe later on
Hi there Carolm
Yes its great to know that its not the end of the line when we get mets and I am sure we all think it at first. So keep your chin up.
As for the treatment - I was on Zoladex injections for a year and then asked to have radio therapy on my overies ( I was 50 at the time and pre meno) My Specialist said OK . I had 7 radio therapy and all I had about 10 days after was a TERRIBLE tummy ache for 2 days and didnt leave the loo for that time. Then of course I had hot flushes but I had those with Zoladex as well.
But to me it was worth it .
I think it is something to think about and talk again to your Spec. I mean it is YOU who is going through this and not him.
Keep fighting and yes you will see your littler girl grow up and yes you will be there for her.
Keep in touch as we all need each other
Luv jANE